Cystic Fibrosis information

site URL - http://cfinformer.tripod.com/

Site description: These pages are intended for world wide web as a resource of information on Cystic Fibrosis in English and Dutch they also link to other resources on Cystic Fibrosis.




Topic: Top/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages
LINKURI & TITLEDESCRIPTION & TOPIC
Previous 10The Cystic Fibrosis Center Ltd, Dead Sea, Israelhttp://www.cfcenter.co.il/ The Cystic Fibrosis Center Ltd, Dead Sea, IsraelTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Camps Seasonal health camp on the Dead Sea. Information on staff, programs, photo gallery and newsletter.
PreviousLungs for Shawnhttp://www.geocities.com/atmshawn/ Lungs for ShawnTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Site about Shawn Hunter a 27 year-old man with CF who is waiting for a double lung transplant. Includes a journal of what is happening with Shawn.
Random 1Children's Heart Networkhttp://www.childrensheartnetwork.org/ Children's Heart NetworkTop/Regional/North_America/Canada/British_Columbia/Health/Conditions_and_Diseases Offers support, information and education to people dealing with congenital or acquired heart disease. Newsletter, event details, and information about medical and support services are available.
Random 2NORD: Zollinger Ellison Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Zollinger%20Ellison%20Syndrome NORD: Zollinger Ellison SyndromeTop/Health/Conditions_and_Diseases/Digestive_Disorders/Stomach/Peptic_Ulcer/Zollinger-Ellison_Syndrome A list of alternate names, a general discussion and resources.
Random 3OnTumor: Brain Tumorshttp://www.ontumor.com/brain/home.html OnTumor: Brain TumorsTop/Health/Conditions_and_Diseases/Cancer/Brain_and_CNS Provides general information in a fact sheet format with access to articles, links, treatment options and clinical trials.
Random 4Xaracon, Ltd.http://www.xaracon.com/ Xaracon, Ltd.Top/Business/Healthcare/Computing/Software/Occupational_Health_and_Safety Asbestos database package.
Random 5Orysi - Aromatherapy and Body Carehttp://www.orysi.com/ Orysi - Aromatherapy and Body CareTop/Shopping/Health/Alternative/Aromatherapy/Essential_Oils Full line of aromatherapy products, including essential oils, therapeutic oils, diffusers, floral waters, fragrances, carrier oils, soaps, and candles for wholesale and retail sales.
NextThe Cystic Fibrosis Web page of the Niagara Cystic Fibrosis Chapter Canadahttp://www.iaw.on.ca/~meb/ The Cystic Fibrosis Web page of the Niagara Cystic Fibrosis Chapter CanadaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Information from the Niagara Cystic Fibrosis chapter in Canada.
Next 10Personal page for Aleeyahttp://www.geocities.com/WallStreet/Floor/1739/ Personal page for AleeyaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Personal_Pages Page by a woman for her granddaughter who has cystic fibrosis.
Random 1Ballet Quad Citieshttp://www.balletquadcities.com/index.html Ballet Quad CitiesTop/Arts/Performing_Arts/Dance/Ballet/Companies/North_America/United_States/Professional As the only professional company in the area, Ballet Quad Cities provides classical and contemporary dance to the entire community through outstanding performances, entertaining lecture-demonstrations and innovative educational outreach programs for people of all ages. (Rock Island, IL)
Random 4Friends of Scottish Country Dancinghttp://members.fotki.com/lord-South-Highland/ Friends of Scottish Country DancingTop/Arts/Performing_Arts/Dance/Folk_Dancing/Celtic/Scottish/Branches_of_the_Royal_Scottish_Country_Dance_Society/Central_and_South_America Group that meets every Tuesday at 9pm. in a Medieval Restaurant in Buenos Aires City for a Scottish country dance meeting. See pictures and address.
Random 4Executive Connections, Inc.http://www.connectingexecs.com/ Executive Connections, Inc.Top/Business/Healthcare/Employment/Recruitment_and_Staffing/Recruiters A search firm specializing in healthcare advertising, medical communications and marketing.
Next 70European Working Group on CFTR Expressionhttp://central.igc.gulbenkian.pt/cftr/index.html European Working Group on CFTR ExpressionTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/CFTR_and_Genetic_Mutations The purpose of this website is to provide information which may be of interest to researchers in the fields of CFTR expression and Function.
Previous 70Xeroderma Pigmentosum Societyhttp://www.xps.org Xeroderma Pigmentosum SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Xeroderma_Pigmentosum Resource for information about the disease and about the not-for-profit support organization devoted to supporting patients and families and promoting research. Links, contact information, XP Society news about fund raising events and the unique Camp Sundown program.
Next 170Keep Kids Healthyhttp://www.keepkidshealthy.com/welcome/conditions/beckwithwiedemann.html Keep Kids HealthyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Beckwith-Wiedemann_Syndrome A discussion of beckwith-wiedemann syndrome, its features and treatments.
Previous 170Trisomy 21 Online Communityhttp://trisomy21online.com Trisomy 21 Online CommunityTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome For all those touched by people with all three forms of Trisomy 21. Community includes message forums, chat room, information for parents who have just found out their child has Trisomy 21, pictures and many other information pages and links.
Next 270
Previous 270Dr. David Edelmanhttp://www.sweatstop.com/ Dr. David EdelmanTop/Health/Conditions_and_Diseases/Skin_Disorders/Hyperhidrosis/Clinics Tavenier, FL based clinc. Hospital privileges at Mariner's Hospital. Surgical treatment for handsweating and hyperhidrosis using the latest, most advanced techniques.
Other resource N0 Yahoo Groups: Hidradenitis Suppurativa Awarenesshttp://groups.yahoo.com/group/HS-Awareness Yahoo Groups: Hidradenitis Suppurativa AwarenessTop/Health/Conditions_and_Diseases/Skin_Disorders/Hidradenitis_Suppurativa Details about the group and its purpose which is to spread the word and offer support through activism.
Other resource N1 Yahoo Groups: Hidradenitishttp://groups.yahoo.com/group/hidradenitis Yahoo Groups: HidradenitisTop/Health/Conditions_and_Diseases/Skin_Disorders/Hidradenitis_Suppurativa Large message board for sufferers of this disease.
Other resource N2 Hidradenitis Researchhttp://www.expage.com/hidradenitisindex Hidradenitis ResearchTop/Health/Conditions_and_Diseases/Skin_Disorders/Hidradenitis_Suppurativa Collection of articles and information about the research into this disease.
Other resource N3 Dermatlashttp://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=63 DermatlasTop/Health/Conditions_and_Diseases/Skin_Disorders/Hidradenitis_Suppurativa Offers a Dynamic Hidradenitis Suppurativa image collection.
Other resource N4 Hidradenitis Suppurativa Linkshttp://www.frontiernet.net/%7eruthb/HidradenitisSuppurativa.html Hidradenitis Suppurativa LinksTop/Health/Conditions_and_Diseases/Skin_Disorders/Hidradenitis_Suppurativa Find a comprehensive listing of links relating to all aspects of HS.
Other resource N5 The UDGD Spothttp://www.camp-a-roo.com/UDGD/ The UDGD SpotTop/Health/Conditions_and_Diseases/Genetic_Disorders Resources and information for families of children with genetic disabilities or syndromes that are still awaiting a diagnosis.
Other resource N6 Genetic and Rare Conditionshttp://www.kumc.edu/gec/support/ Genetic and Rare ConditionsTop/Health/Conditions_and_Diseases/Genetic_Disorders Lay advocacy groups, support groups, information on genetic conditions and birth defects for professionals, educators and individuals. Disorders from A-Z.
Other resource N7 Washington University in St Louishttp://www.siteman.wustl.edu/physician/clinical_trials/non_therapeutic_1736_detail.shtml Washington University in St LouisTop/Health/Conditions_and_Diseases/Genetic_Disorders Family resource for individuals with Papillon Lefevre, Haim-Munk Syndrome and Prepubertal Periodontis. Interested families may participate in a registry dedicated to learning about the natural history of these three conditions.
Other resource N8 IMMD Institute of Medical Molecular Diagnostics Ltd.http://www.immd.de/ IMMD Institute of Medical Molecular Diagnostics Ltd.Top/Health/Conditions_and_Diseases/Genetic_Disorders The IMMD is a genetic testing laboratory located in Germany. Provides genetic tests for hereditary breast cancer, various cardiovascular diseases or diseases with onset in childhood.
Other resource N9 Glutaric Aciduria Type 1http://www.ga1.freeservers.com Glutaric Aciduria Type 1Top/Health/Conditions_and_Diseases/Genetic_Disorders/Glutaricaciduria Information and links for children with GA1.
Other resource N10 National Library of Medicine: CNFShttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome252.html National Library of Medicine: CNFSTop/Health/Conditions_and_Diseases/Genetic_Disorders/Craniofrontonasal_Dysplasia Offers synonyms of craniofrontonasal syndrome, a summary and a list of features.
Other resource N11 Ablepharon Macrostomia Syndromehttp://www.angelfire.com/ga2/AMS/ Ablepharon Macrostomia SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Ablepharon-Macrostomia_Syndrome A personal site with information and links about this disease.
Other resource N12 NORD: Ablepharon Macrostomia Syndromehttp://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Ablepharon%20Macrostomia%20Syndrome NORD: Ablepharon Macrostomia SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Ablepharon-Macrostomia_Syndrome A look at the alternate name, a general discussion and further resources.
Other resource N13 National Library of Medicinehttp://www.nlm.nih.gov/mesh/jablonski/syndromes/syndrome001.html National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Aarskog_Syndrome Aarskog syndrome, the synonyms, a summary and a list of the major features.
Other resource N14 Family Village - Aarskog Syndromehttp://www.familyvillage.wisc.edu/lib_aars.htm Family Village - Aarskog SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Aarskog_Syndrome Offers links for support and information concerning this disease.
Other resource N15 FRAXA Research Foundation Home Pagehttp://www.fraxa.org/ FRAXA Research Foundation Home PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fragile_X_Syndrome Non-profit organization run by parents. Fighting to find a cure for Fragile X Syndrome and helping Fragile X Family's.
Other resource N16 Fragile X Fact's Pagehttp://www.ich.ucl.ac.uk/cmgs/frax98.htm Fragile X Fact's PageTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fragile_X_Syndrome Describing Fragile X Syndrome.
Other resource N17 Queensland Fragile X Associationhttp://cwpp.slq.qld.gov.au/qldfragilex/ Queensland Fragile X AssociationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fragile_X_Syndrome About QFXA, news, events, links and contacts. Also information of fragile X syndrome.
Other resource N18 Living with Fragile Xhttp://fragilex.ca Living with Fragile XTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fragile_X_Syndrome One family's account of raising 3 children with Fragile X.
Other resource N19 Maryland Fragile X Resource Grouphttp://www.mdfragilex.org/ Maryland Fragile X Resource GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Fragile_X_Syndrome A community of families in and around the Washington-Baltimore metro area that have children affected by Fragile X Syndrome. Includes news, upcoming events, and resources.
Other resource N20 Prader-Willi Alliance of New Yorkhttp://www.prader-willi.org Prader-Willi Alliance of New YorkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Prader-Willi_Syndrome Represents the interests of individuals in New York State with Prader-Willi syndrome, their families, and the professionals who provide services to the Prader-Willi population.
Other resource N21 Prader-Willi Syndrome Association (USA)http://www.pwsausa.org/ Prader-Willi Syndrome Association (USA)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Prader-Willi_Syndrome Characteristics include hypotonia, insatiable appetite, obesity if food intake is uncontrolled, hypogonadism and incomplete sexual development, developmental delays, variable degrees of mental retardation or functional retardation, short stature (adult), small hands and feet, mild dysmorphology, and behavior problems which can be severe.
Other resource N22 The Prader-Willi Syndrome Association (UK)http://www.pwsa-uk.demon.co.uk/ The Prader-Willi Syndrome Association (UK)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Prader-Willi_Syndrome Information and resources about this chromosomal disorder.
Other resource N23 The Foundation for Prader-Willi Researchhttp://www.pwsresearch.org/ The Foundation for Prader-Willi ResearchTop/Health/Conditions_and_Diseases/Genetic_Disorders/Prader-Willi_Syndrome A non-profit group of volunteer families, friends and researchers aiming to raise funds for research into finding treatments.
Other resource N24 Growth Charts for Children with Down Syndromehttp://www.growthcharts.com Growth Charts for Children with Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Charts included are for height, weight, and head circumferences. Printable.
Other resource N25 DS Sites on the Internethttp://www.ds-health.com/ds_sites.htm DS Sites on the InternetTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome A large listing of sites on the internet dealing with Down Syndrome, compiled by Len Leshin, M.D.
Other resource N26 Mosaic Down Syndromehttp://www.mosaicdownsyndrome.com Mosaic Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Stories, message boards, and a FAQ.
Other resource N27 Diagnosis Down Syndromehttp://leeworks.net/DDS/ Diagnosis Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Personal, loving stories from parents on adoption of a Down Syndrome baby. Also stories from those that found out during the pregnancy, and those that had a diagnosis after.
Other resource N28 The PREP Programhttp://www.prepprog.org The PREP ProgramTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome A school and resource centre. Includes descriptions of what they do with toddlers, school-aged children, and teens. Also included are their fees.
Other resource N29 Learn about Down Syndromehttp://www.mamashealth.com/syndrome/downsyn.asp Learn about Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome What it is, symptoms, and statistics as to how often it occurs.
Other resource N30 Down's Syndrome Medical Interest Group (UK)http://www.dsmig.org.uk/ Down's Syndrome Medical Interest Group (UK)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Information for healthcare professionals, including UK-specific growth charts, guidelines, and medical information library.
Other resource N31 Chapel Haven - New Haven, Connecticuthttp://www.chapelhaven.org Chapel Haven - New Haven, ConnecticutTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Residential school and independent living facility offering a range of supports for adults (18+) with cognitive disabilities
Other resource N32 National Down Syndrome Cytogenetic Register (UK)http://www.mds.qmw.ac.uk/wolfson/ndscr/ National Down Syndrome Cytogenetic Register (UK)Top/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Information about an anonymous register allowing researchers to analyse possible causal factors. Includes interpretation of the results.
Other resource N33 New Attitudes Enhance Care of Adults with Down Syndromehttp://healthlink.mcw.edu/article/1031002308.html New Attitudes Enhance Care of Adults with Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome A short MCW healthlink article by Dr. David Smith regarding successful health care management of people with Down syndrome.
Other resource N34 Down Syndrome Forumhttp://www.downsyndromeforum.com Down Syndrome ForumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome Find a community for families associated with down syndrome to share. Includes discussions, web links, surveys and stats.
Other resource N35 Cognitive Enhancement Research Institutehttp://www.ceri.com/downhome.htm Cognitive Enhancement Research InstituteTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Nutrition Articles on smart drugs, antioxidants, and other vitamins in nutritional intervention in Down Syndrome. Also includes an interview with Dixie Lawrence.
Other resource N36 Jacob and DS Treatmenthttp://home.austarnet.com.au/caradonhouse/down.htm Jacob and DS TreatmentTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Nutrition A personal story of how Jacob was successfully treated using metabolic therapy. There are pictures.
Other resource N37 Down's Syndrome Association, Lincolnshire Branchhttp://www.emandan.freeserve.co.uk Down's Syndrome Association, Lincolnshire BranchTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Poems and stories, articles, and book reviews.
Other resource N38 Down's Syndrome Association, London Branch, UKhttp://www.downs-syndrome-london.org.uk Down's Syndrome Association, London Branch, UKTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Support group for parents and carers of people with Down's Syndrome.
Other resource N39 Eastern Pennsylvania Down Syndrome Centerhttp://www.epdsc.org/ Eastern Pennsylvania Down Syndrome CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Includes a message board and chat room, also a list of their coming events.
Other resource N40 Down Syndrome Research Online Advocacy Grouphttp://www.dsresearch.org Down Syndrome Research Online Advocacy GroupTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Information on clinical, biomedical, and scientific research into Down syndrome.
Other resource N41 Piedmont Down Syndrome Support Networkhttp://www.thedepot.com/groups-downsyndrome Piedmont Down Syndrome Support NetworkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Information about the parent support group for Winston-Salem, North Carolina.
Other resource N42 Gold Coast Down Syndrome Organizationhttp://www.goldcoastdownsyndrome.org Gold Coast Down Syndrome OrganizationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations In Palm Beach county, FL. Provides a FAQ and inclusion information.
Other resource N43 Aim - High Down Syndromehttp://www.aim-high.org Aim - High Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations In New York. Articles, membership, and events.
Other resource N44 Down Syndrome Catalana Foundationhttp://www.fcsd.org/eng/index.htm Down Syndrome Catalana FoundationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Information about the foundation.
Other resource N45 Trisomy 21 Foundation of Northern New Yorkhttp://www.trisomy21foundation.com Trisomy 21 Foundation of Northern New YorkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Includes information on clinical studies, a scrapbook, upcoming events, and newsletter.
Other resource N46 North Country Down Syndrome Associationhttp://ncdsasite.org North Country Down Syndrome AssociationTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Provides information about the association, which is located in Plattsburgh, NY, serving Clinton and Essex Counties. Also has pictures.
Other resource N47 Piedmont Buddy Walkhttp://www.piedmontbuddywalk.org Piedmont Buddy WalkTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Annual non-profit event to benefit families affected by Down syndrome with all proceeds going to the Piedmont Down syndrome Support Network (PDSSN)of North Carolina.
Other resource N48 Down Syndrome Liverpoolhttp://www.ds-liverpool.org.uk Down Syndrome LiverpoolTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Local support group for those with DS, their parents and carers. A registered charity in the UK
Other resource N49 Down Syndrome Association of Greater New Orleanshttp://www.dsagno.com/ Down Syndrome Association of Greater New OrleansTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Has photo gallery and a list of the association's board members.
Other resource N50 Jane and Richard Thomas Center for Down Syndromehttp://www.cincinnatichildrens.org/svc/dept-div/disabilities/down/default.htm Jane and Richard Thomas Center for Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations at Cincinnati Children's Hospital Medical Center offers innovative approaches to caring for children with Down syndrome.
Other resource N51 The Ups of Downshttp://www.littleangels.gbr.cc The Ups of DownsTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Organizations Dedicated to parents of children with Down Syndrome. Membership is free and open to anyone. Includes information about Downs, education and literature.
Other resource N52 John: The Sky's the Limithttp://www.comwares.net/marrs/index.html John: The Sky's the LimitTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Includes his developmental program that resulted in John being at the head of his Kindergarten class at age five. Also lists his nutritional supplements.
Other resource N53 Abigail's Down Syndrome Pictures and Storieshttp://www.iolky.com/down-syndrome/children/pics/ Abigail's Down Syndrome Pictures and StoriesTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Stories and pictures from her and her family's daily life. Also the article, "God, Do You Care," and a FAQ providing information on how Abigail achieved good health and development.
Other resource N54 Darbi's Placehttp://coolbeansdesigns.com/darbisplace/index.htm Darbi's PlaceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Pictures, a mom's story, and information about about Darbi's open heart surgery.
Other resource N55 ELIJAH-dot-NEThttp://elijah.net/ ELIJAH-dot-NETTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Pictures of Elijah at various ages, with links to information on Down Syndrome.
Other resource N56 Ryan's Storyhttp://leeworks.net/Lee/ryan.html Ryan's StoryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Ryan's birth and diagnosis, Down Syndrome links, and family pictures.
Other resource N57 Rachel's Storyhttp://freespace.virgin.net/rachels.story/ Rachel's StoryTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages Has a diary by Rachel's Mum to chart her milestones. Also a hospital diary on Rachel's heart surgery.
Other resource N58 About A Boy With Down Syndromehttp://www.gabrieldownsyn.com About A Boy With Down SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Down_Syndrome/Personal_Pages This site has photos, a book list, and essays on having a child with disabilities
Other resource N59 Turner's Syndrome Society, Texashttp://www.onr.com/ts-texas/ Turner's Syndrome Society, TexasTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome Providing links and information about Turner's Syndrome. Definition and Synonyms, FAQ, TSS Societies (National, State, and Local), Associated Links, Newsgroup discussions, Conference Information.
Other resource N60 National Library of Medicinehttp://www.nlm.nih.gov/cgi/jablonski/syndrome_cgi?term=Turner+syndrome+(TS)&field=name National Library of MedicineTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome Offers synonyms for Turner syndrome, a summary and a list of major features.
Other resource N61 Turner Syndromehttp://www.turnersendromu.8m.com Turner SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome A site prepared by the family of a young girl with TS. Includes her story, information about the syndrome and its treatment, FAQs, photos and links. [English, Turkish]
Other resource N62 Turners Syndrome Supporthttp://www.geocities.com/turnersonline Turners Syndrome SupportTop/Health/Conditions_and_Diseases/Genetic_Disorders/Turner_Syndrome A personal site offering support and information.
Other resource N63 MedicineNet.com : Alkaptonuriahttp://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ArticleKey=7804 MedicineNet.com : AlkaptonuriaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alkaptonuria An article about this disease beginning with an explanation as to what it is, followed by how it is inherited, how it affects the joints, symptoms, diagnosis and treatment.
Other resource N64 Xeroderma Pigmentosum Societyhttp://www.xps.org Xeroderma Pigmentosum SocietyTop/Health/Conditions_and_Diseases/Genetic_Disorders/Xeroderma_Pigmentosum Resource for information about the disease and about the not-for-profit support organization devoted to supporting patients and families and promoting research. Links, contact information, XP Society news about fund raising events and the unique Camp Sundown program.
Other resource N65 Xeroderma Pigmentosumhttp://digilander.libero.it/camdic/XERODERMA%20PIGMENTOSUM.html Xeroderma PigmentosumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Xeroderma_Pigmentosum An article about this disorder in English and Italian along with some images.
Other resource N66 Understanding Xeroderma Pigmentosumhttp://www.cc.nih.gov/ccc/patient_education/pepubs/xeroderma.pdf Understanding Xeroderma PigmentosumTop/Health/Conditions_and_Diseases/Genetic_Disorders/Xeroderma_Pigmentosum Online booklet providing a general overview and description of the disorder and answers to frequently asked questions. Produced by the US National Institues of Health. [PDF Format]
Other resource N67 Williams Syndromehttp://www.ninds.nih.gov/health_and_medical/disorders/williams.htm Williams SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Williams_Syndrome Information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Other resource N68 A Music Camp for Those Afflicted but Gifted, Toohttp://nytimes.com/2002/08/26/national/26CAMP.html A Music Camp for Those Afflicted but Gifted, TooTop/Health/Conditions_and_Diseases/Genetic_Disorders/Williams_Syndrome New York Times feature article about the Belvoir Terrace summer music camp program for people with Williams syndrome.
Other resource N69 Moylan Family Websitehttp://homepage.eircom.net/~moylanfamily Moylan Family WebsiteTop/Health/Conditions_and_Diseases/Genetic_Disorders/Williams_Syndrome An Irish family's experience of Williams Syndrome.
Other resource N70 Alagille Syndromehttp://www.ikp.unibe.ch/lab2/Alagille.htm Alagille SyndromeTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alagille_Syndrome Discussion of the genetics, clinical presentation, natural history, and treatment of Alagille's syndrome.
Other resource N71 Children's Liver Alliancehttp://www.liverkids.org.au/alagille.htm Children's Liver AllianceTop/Health/Conditions_and_Diseases/Genetic_Disorders/Alagille_Syndrome A description, the diagnosis, symptoms, treatment and complications of Alagille syndrome.
Other resource N72 PulmonologyChannelhttp://www.pulmonologychannel.com/cf/ PulmonologyChannelTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Information on cystic fibrosis.
Other resource N73 Cystic Fibrosis Resource Centerhttp://www.healingwell.com/cysticfibrosis/ Cystic Fibrosis Resource CenterTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Directory about Cystic Fibrosis, including books, medical news, articles and information, links, message boards.
Other resource N74 Cystic Fibrosis Linkshttp://www.goodgulf.com/cystic.html Cystic Fibrosis LinksTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Cystic Fibrosis Links and Information
Other resource N75 Cystic Fibrosis Managementhttp://www.thorne.com/altmedrev/fulltext/cystic.html Cystic Fibrosis ManagementTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Article detailing therapeutic options for co-management.
Other resource N76 Cystic Fibrosis Western Australiahttp://www.cysticfibrosiswa.org Cystic Fibrosis Western AustraliaTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Includes a calendar of events, information for people with CF who travel to Australia from other countries (what their healthcare entitlements are), pointers for teachers of children with CF, and a list of services and support.
Other resource N77 The Spirit of Lo - Inspirational Bookhttp://www.spiritoflo.com The Spirit of Lo - Inspirational BookTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Book about Cystic Fibrosis and the effects on the family. Tells the story of an ordinary family and their struggle with having a chronically ill child.
Other resource N78 Home Page-Harminderhttp://student.biology.arizona.edu/honors96/group9/Page2.html Home Page-HarminderTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Details from an article "CFTR as a cAMP-Dependent Regulator of Sodium Channels". Also, what new treatments might devolop if the theory behind this article prove true.
Other resource N79 CysticFibrosis.comhttp://cysticfibrosis.com/ CysticFibrosis.comTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis Internet community for cystic fibrosis patients, families and loved ones. Information on clinical trials, gene therapy, testing, associations, research and events.
Other resource N80 Official Site for CFF Jack Buck Book Eventhttp://www.jackbuckbook.com/homepage.asp Official Site for CFF Jack Buck Book EventTop/Health/Conditions_and_Diseases/Genetic_Disorders/Cystic_Fibrosis/Fund-Raisers "Jack Buck, A Collection of Poems and Stories", by Jack Buck. 100% of the proceeds from the sale of this book go directly to Cystic Fibrosis Foundation.

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